Makeda, 13, was diagnosed in 2019 with a fatal neuro-degenerative disease called aspartylglucosaminuria, or AGU, that has no treatment or cure. Her mother Barbara has connected with other families around the world who have come together to fund research on a promising treatment, a gene therapy, and she has set up a non-profit, Rare Trait Hope Society, with the goal of funding an upcoming clinical trial in the States that Makeda and other children can participate in.
Please help these families reach their goal by donating to Makeda's GoFundMe campaign or Rare Trait Hope Society: raretraithope.ca/
(CRA#71150 6071 RR0001)
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Barbara (Makeda's mom)